I had my open Distal Pancreatectomy and Splenectomy surgery 16 years ago in June of 2007. I was 28 years old at the time. They took my spleen and 80% of my pancreas, leaving 20% of the head of my pancreas and a huge scar that looks like a rainbow over my belly button. Back then, I didn't know what to expect and wasn't able to reach out to get advice from people who had had the same surgery like you can today. I was really scared. I decided to have a going away party for my spleen, an excuse to get all of my favorite people together. I have a scrapbook full of pages that my friends made for me that I will always cherish.
Ever since I've joined the online support group for my surgery, I’ve been meaning to write a blog post to help those who will be facing this surgery feel more prepared than I was.
So If I were to give myself advice back then, it would look like this:
A. The best recovery after surgery comes with being in the best shape you can be in beforehand. This is a good reminder for myself to try to be as active as possible, to make any upcoming surgery easier to recover from. I realize many of us aren't in a good position to exercise so just do the best you can with what you have and what your doctor can help you with. If you can, try walking every day to get in the best physical shape you can beforehand.
B. Get ready at home:
1. Try to get your home ready for your return. Finish up any paperwork, pay bills, tidy up, laundry done etc. You won't much feel up to anything like this for a few weeks at least. 2. Recruit someone to help you when you get home after surgery. Not everyone is living with someone else that can do this but you will need some help when you get home, especially if you have young kids. You should be able to walk if you walked beforehand, so you shouldn't need a walker or cane unless you used one before your surgery. You'll be slower but you should still be able to walk afterwards and you'll want to walk lots to get rid of the excess gas build up that happens during surgery! For the first few days you might want to have someone that can give you a hand with things and prepare meals for you. 3. If you have small children, be sure to have someone else that can care for them as you will need to rest and will have trouble picking up and preparing meals. You will be sore and exhausted for a few weeks at least.
4. Some people choose to have a bed or recliner in the main part of the home to sleep in. If you have your bed on a floor that is accessible only with stairs, you may consider this if you don't have someone to help you up and down stairs for the first little while. Some people also suggest one of those maternity pillows to sleep with. I've never tried it so I cannot speak to it but I've heard it can be helpful as well.
5. Before your surgery, they might ask you to do some weird preparation things. I had to wash with soap in certain places and take a fleet enima to clean me out. And boy does it clean you out! Lord almighty, if you've never done that, just make sure you clear your schedule for the next while because you aren't leaving the bathroom. I will suggest some diaper rash cream for this part. You'll thank me for this tip!
C. What to bring to the hospital:
1. When deciding what to bring with you to the hospital, try to keep it light. I didn't have the strength to lift my suitcase to get it on the bed to grab my stuff out, of so I wouldn't even use a traditional suitcase with a side zipper for starters. The tiny cabinet closet in my hospital room fit the suitcase but wasn't big enough to open it in the closet. So I would use a duffle bag or something like that, something easy to open on the top to grab things out of if it's sitting on the floor of a little cabinet.
2. Never pack valuables or jewelry.
3. I have a hanging toiletry bag that I use with my name on it. I have soap, shampoo, conditioner, a toothbrush with a cover, floss, toothpaste, a tiny collapsesable cup, my razor, deodorant and facewash. The hospital provides towels. When you feel up to having your first shower, it will be exhausting but you'll feel amazing after you shower. At least I did! It was so refreshing to do that I still remember after all these years.
4. Of course I had my brush and hairbands as well. Washing and brushing my long hair was exhausting. Speaking of hair, I will mention that most people experience hair loss after this surgery because it is so stressful on the body. It can be scary at first but as long as you're absorbing nutrients properly, the hairloss should stop eventually and the hair should grow back as before.
5. Other things to bring to the hospital:
*Slippers with a non-slip sole on the bottom that are easy to slip on and off. I'm a bit of a germaphobe about certain things, like hospitals. I brought an older pair of slippers that I tossed in the garbage after my surgery. Otherwise I would have made sure to wash them as soon as I got home. *the hospital will provide gowns and these are best while you're hooked up to different things in the hospital. *bring a robe or ask for a robe so you can walk around more comfortably as you may feel uncomfortable and cold with only a gown on. *you will want to have your own underwear and a couple pairs of very loose fitting pj pants and t-shirts to wear once the tubes are all out of you. *you'll want a very comfortable outfit to wear on the way home from the hospital. Be mindful of any elastic waist as you don't want something tight around your abdomen. *I know I said no valuables but I'm bringing my cellphone and a long charging cable no matter what. *Possibly a tablet with pre-downloaded shows and music incase the wifi in the hospital is bad, and with it's charger of course too. *Headphones or earbuds to listen to movies or podcasts or music. *sleepmask and earplugs. It's impossible to sleep in the hospital!! *maybe your own pillow and blanket. Some people are more picky than others about this. It could add more comfort if it's important to you. To me it's more stuff to keep track of and clean afterwards. *maybe a heating pad with a long cord if you're the type that gets very cold. The hospital may or may not be able to provide something like this. I always asked for heated blankets :) *lip balm. Trust me on this, you'll be pretty dehydrated afterwards and will want something soothing for your lips. *Maybe your favorite non-scented hand cream as well. Please don't bring strong smells into a hospital setting as many people are quite sensitive to this. *bring a couple things to occupy yourself with. A book, a journal or notebook, some crossword puzzles and a pen. Hospitals are quite boring and you'll be sleeping quite a bit but I always bring something just incase I'm bored out of my mind. I was on lots of drugs after my surgery and tried to write in the journal I had. The first few lines in my journal are legible but then the words trail off the side of the page as the morphine kicked in. It's humorous to me reading that sometimes. You will also want to write down notes pertaining to things that doctors or nurses tell you or make notes of certain meds or names of nurses you want to thank later as well. *a pillow for the ride home. Get your ride to bring a pillow in the vehicle for your ride home to hold against your stomach for when they go over bumps or have to stop. You'll feel more secure this way and have less jolts to your incision.
D. Food: 1. Make freezer meals ahead of time as well if you can. Anything to make life easier after you come home. As for meals to prepare for: I would mainly prepare simple, nutritious soups. Chicken bone broth being the first thing I'd make as it is so incredibly good for you and one of the best things for your gut. I would also have some (dairy free) yogurt and real fermented saurkraut for myself. I would also love some avocado toast. Or just toast to dip into my broth or soups. I don't eat gluten or dairy since my surgery as I find them to be very hard in the digestive system so anything I suggest will not contain gluten or dairy. There are some really great gf/vegan breads now. I like Little Northern Bakehouse the best.
2. Other simple meals with cooked vegetables, mashed potatoes, rice, & lean meats would also be good.
3. I recommend staying away from fried foods, processed meats, fruits, fruit juices, coffee, and raw vegetables at first as these seemed to upset my stomach quite a bit. Think easy to digest and bland at first and if you choose to eat gluten and dairy containing foods you may not feel well at all. 4. I also do not recommend any kind of hospital drink like Ensure or Boost as these contain lots of sugar, bad oils and dairy. They are very convenient and some are delicious but if you can, try not to put those in your body unless you have no other choice, especially if you're fighting cancer, or possibly now, diabetes. No one needs that amount of sugar. I believe dairy can cause cancer to grow as well and those oils and sugar cause inflammation that our bodies just don't need and more of.
I have found another brand of pre-made meal replacement drinks that had better ingredients though they were more costly. They were called "Sperri" and the ingredients were much better than Boost or Ensure. A person could also make their own meal replacement shakes as well. When I did this, I would use a milk alternative, a vegan protein powder, and a handful of greens, half of a banana, half of an avocado or a shot of MCT, flax seed or hemp seed oil, or some hemp hearts if I didn't have the oils on hand. I don't put much fruit in the shakes as fruit can upset the stomach. Protein in the diet is an important part of the building blocks our bodies need for recovery so the quality of the protein is important. I'm very picky about protein powder. I try to choose a vegan based protein powder that isn't overly sweet or gritty as many can be. This part can be trial and error to find what works best for you so I recommend looking at online reviews before purchasing any type of protein powder.
5. You could also bring a few of your favorite beverages or snacks in your bag with you to the hospital but to be perfectly honest, there will be times you shouldn't eat or drink anyway. You won't know what you can handle until afterwards. So maybe this is something you task a visitor with bringing you after a few days instead.
6. I could write an entire article about how much I despise hospital food. Especially as a diabetic patient fighting cancer. My article would talk about the sheer number of carbs (sugar) they offer, the lack of quality vegetables and protein... but for now, those are my highlights.
7. I was appalled that my friend was given a turkey sandwich the day after she had her entire pancreas, spleen, gallbladder, duodenum and part of her intestine removed. Her body wasn't able to digest any of that and she ended up having a second surgery. Not sure if it's because of the food she was given, but it certainly did not help her situation at all. In my experience I would never ever eat solid food like that right after a major surgery like this. They should start by giving you clear fluids, then soft foods in the hospital. The main goal after you wake up from surgery is to have your pain managed, and that you get up and walk to get your insides to wake up as they're in a sort of paralysis.
E. Recovery
1. If you wake up with an NG tube in your nose, you won't be allowed to eat or drink. The NG tube, I found, to be the worst part but it is important because it empties your stomach until you can pass things through your digestive system again. It helps you from feeling nauseated too. I was so thirsty when I woke up with the NG tube in so I remember I was allowed to suck on these little sponges to help a bit with that, then I graduated to ice chips. Tell your visitors they can help you with this part because you might be quite drugged up and uncoordinated at first.
2. Once the NG tube was out, things started to improve for me. But the eating part can be challenging, especially because most doctors, for some reason I still have yet to understand, think that all the digestive enzymes are made in the head of the pancreas and not throughout the whole pancreas. This is what I was told, and because of this, my doctor wasn't thinking that I would need enzymes to digest my food. Well, a few days into my hospital stay proved that I did need enzymes and as I've mentioned previously in this article.
Anyone who has had any portion of the pancreas removed probably will need to take digestive enzymes for life.
3. So now you wake up from a brutal surgery. You need to get your pain under control. If your body is in too much pain it will be hard for it to heal and it will be harder for you to get up and walk around which is the most important thing you can do in the hospital. Rest and walk. Walk and rest. Pain meds will make you constipated though, and that works against you being able to go home. The ultimate goal for you to be able to go home will be a bowel movement. This is where I will make another suggestion. Don't rush this part. Do not try to go home before your body is ready. The last thing you want to do after surgery is to get home and start throwing up and have to get re-admitted. Trust me, I've seen this first hand and you want to avoid leaving the hospital before your body is fully ready. Make sure you're able to eat and drink and fart and poop normally before going home!
4. Now you've made it past the worst part, the surgery is over, the hospital stay is over and now you're clear to go home. You have a prescription for pain meds and hopefully digestive enzymes. Now what? Well you rest. And you walk more. And drink water. You're going to feel exhausted. Everything will make you tired. You'll have a good day and some bad days and more good days. If you're lucky this is how recovery will go for you. Don't push yourself during the first 6 weeks at least. You don't want to develop complications or a hernia.
5. I also recommend trying NOT to eat normally at first. I've been criticized for saying this before. Because Drs will tell you to eat normally and some people think that food is what you need now but I'm going to challenge that thinking. I've been through this, my brother has been through this, my Mom had, and also a friend of mine. If I were to give myself advice I'd say: "take it easy". Drink fluids, eat light, soft foods, avoiding the ones I've already mentioned. Unless you are underweight, fasting is also quite beneficial. Your body can repair itself faster during times of fasting. So go slowly with the foods. Gentle with the body. Lots of rest and little walks.
6. You might lose some of your hair. There's something called telogen effluvium, which is a form of hair loss that happens after a traumatic event like this surgery. It happened to me and I see it a lot in our support group, but I found it to be uniform shedding, no distinctive bald spots or anything and it was temporary for most people. I believe that nutrition absorption has a lot to do with this. So as you begin to eat well and digest your food properly, it should resolve itself. Just be gentle with your hair. You may want to wash it less often.
7. I was able to return to work (a desk job) after 4 months as I had an internal infection that opened up my wound in the hospital. They had to clean me and pack my wound 2x daily for 4 months as I was to heal from the inside out. Some people go back to work after only 3 months.
F. Long term... 1. Long term, this surgery changed my life completely. It prolonged my life but I've never fully recovered my energy. They say you'll feel your best a year out of surgery. I did too. I was able to get pregnant only 11 months after this surgery and had a beautiful healthy baby. I was also riding a motorcycle by the fall of that year!
2. I don't live my life in fear, especially after losing my spleen. I do not take antibiotics and I'm so grateful for that because I believe that antibiotics aren't good for the microbiome. The microbiome is made up of the healthy bacteria that number more than cells in the whole body. This microbiome is the first line of defense in my immune system and therefore I do not want to kill it all off with antibiotics. I wash my hands, but not with antibacterial soap and don't use hand sanitizer either unless I cannot wash my hands normally. I take hygiene seriously but not to the point where it is excessive. I have pets that I feed raw food. I garden, getting my hands fully in the dirt. I’ve flown to a 3rd world country twice and never got sick either time. I've had covid twice and lived to tell. If I get a fever, I take that seriously as infection can get out of control. I don't eat raw meat or fish and I tend to avoid people who are sick. That's it.
3. As far as blood sugar goes, I spent the past 16 years as "blood sugar challenged" but have managed with a low carb diet. I recommend getting a CGM or freestyle Libre to keep track of your blood sugars. I talk about diet quite a bit in my other posts and feel like I've covered all the bases about this surgery now.
I’ve learned so much about my body and what it is capable of because of this surgery and although it is quite difficult, I would still choose this again. It has brought me 16 more years, the best years, of my life and I look forward to many more!
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